Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Tuesday, January 31, 2006

It’s a gray, rainy day today, and I’m thinking about something I usually don’t spend much time thinking about: my hair.

For the past several days, I’ve been on the alert for signs that the predicted, chemotherapy-induced hair loss may be starting. Still no hairs on the pillow or in the bathtub drain this morning – but as I’m toweling off after my shower, my hair feels different. The only way I can describe it is to say it feels like I’ve been swimming in a pool with way too much chlorine. It feels kind of stiff and dry, and my scalp itches.

Maybe it’s just a bad hair day... but somehow, I don’t think so.

A little later, I seriously consider going to the barber shop for the buzz-cut I’ve planned to get, but decide to wait till tomorrow. Or maybe the next day...

Like many guys, I’ve never considered myself to be especially vain about my hair. I’ve had the same basic, low-maintenance hair style for years. If anything, I tend to go a little too long between haircuts – just because I consider fussing with my hair to be a bother.

I’ve never worried too much about baldness, either. I always figured, if it happens, it happens (so far, I’ve been pretty fortunate). But the prospect of losing my hair all at once feels very different. It’s a visible symbol of change.

It means that – especially if I lose my eyebrows as well – everyone I meet will know that I’ve got cancer, and am receiving chemotherapy. I’m not keeping my condition a secret – but on the other hand, I’m not walking around town wearing a sign that says, “Cancer Patient,” either. Will my hair loss change the way strangers deal with me? Will I become not “that guy over there,” but “that poor guy over there with cancer”?

The most famous guy in the Bible who lost his hair was Samson. Samson was a nazirite – a sort of wild and woolly holy man (literally!). The chief distinguishing feature of nazirites was that they never cut their hair (Judges 13:5).

Samson’s long hair is a symbol of his devotion to God, and also the source of his power. While most film and literary treatments of Samson have portrayed the hair-and-power connection as something magical, the biblical writers probably saw it more as symbolic of the strength of his spiritual life. As long as Samson keeps his austere, ascetic ways, the Lord is with him; but once he adopts the settled ways of townsfolk and comes to enjoy his creature comforts a little too much, he ceases to be able to perform those feats of prodigious strength – like catching three hundred foxes and tying their tails together (Judges 15:4), or slaying a thousand warriors with the jawbone of a donkey (15:15). It’s pretty colorful stuff – not to mention grisly, at times – but this is a sort of Paul Bunyanesque tall tale, so I think we can forgive the storytellers a little poetic license.

When Samson gets mad, he’s kind of like the Incredible Hulk (except for the green skin thing, which the Bible never mentions). It’s not gamma rays that make Samson so powerful; it’s the fact – as he reveals to his lover Delilah (a Philistine sympathizer) – that “a razor has never come upon my head” (16:17). Delilah gets out the razor while he’s sleeping, and that’s the end of ol’ Sam’s super-strength.

At least for a while. As he’s languishing in prison, Samson’s hair starts to grow back. In the climactic final scene, he pulls down the stone pillars of the Philistines’ banqueting hall, killing more people in that one act than he’d killed in his entire life. He also sacrifices his own life, buried in the rubble.

It just goes to show how powerful a symbol hair is. For most of us, it’s part of our self-image, our sense of who we are. I suppose what bothers me most about losing it is the subconscious fear that my cancer is going to change me, on some fundamental level – that it will somehow take away my personhood. It won’t, of course – but, like many others who’ve got this disease, I’m going to have to work on seeing myself as a person with cancer, rather than a victim of it.

Monday, January 30, 2006

Cancer treatment brings many stresses, many of which I've written about in this journal. One stress I haven't mentioned yet is dealing with the bills.

Over the past several months, I haven't been paying very close attention to the bills that have been arriving. I've let them pile up. Presbyterian ministers like myself have pretty good medical insurance – Blue Cross/Blue Shield coverage provided through our denomination's Board of Pensions. So, I know the first step is letting the insurance pay on these. That takes a number of weeks.

For each bill, there's a corresponding mailing from Blue Cross/Blue Shield – the Explanation of Benefits (EOB). This explains the detailed rationale behind the insurance company's decision of what to fund, and how much. Usually the insurance company negotiates a special rate with the doctor, hospital or lab – so, the revised bills indicate an adjusted starting figure, from which the insurance payment is then subtracted, leaving a new "bottom line." The original amount billed has little relation to reality: it's complete and utter fiction. This means the only appropriate thing to do with a new medical bill is to ignore it for a while.

Each doctor, hospital or lab has a slightly different way of accounting for expenses – so, while the EOB forms are pretty standard, comparing them to the medical bills is a challenge. Those bills are infamous for fuzzy, imprecise language, arcane abbreviations and numerical codes for which no explanatory key is provided.

I don't know how this strikes other people, but to me this is an absolutely crazy system. The amount of time, money and energy spent in this country on medical financial record-keeping can probably never be measured. One estimate I heard is that forty cents of every medical dollar spent in the U.S.A. goes to record-keeping. That same estimate included figures for Canada, which has a national health-care system: it's supposedly five cents on every dollar up there.

Unlike many Americans, I've actually been a participant in a so-called "socialized medicine" system. During two different years when I studied in Britain (at Oxford and St. Andrews), I was covered under National Health. While, as a young and healthy university student, I didn't have too much need for health-care services, I did have some experience with British medical providers – and it was all very favorable. One thing I can say: Scotland is the only place I've ever had a house call from a doctor.

I know, from conversations with nurses and other health-care professionals, that they all feel snowed under with paperwork. Patient care suffers, as a result. Once, America had the finest health-care system in the world. We're still up there in terms of quality, but I think we've lost our pre-eminent place. The thing that's pushed us out of first place is the health-care funding mess. Doctors today are disturbingly like the pathetic figure of Marley's Ghost in Dickens' A Christmas Carol: they're shackled with the chains and money-boxes of all the armies of accountants they have to deal with.

There's a certain cost to patients as well. There's a legitimate concern about all the time doctors and nurses must spend on accounting paperwork, but nobody seems to want to talk about the untold hours that patients and their families must spend puzzling out their medical bills. I know that, in the next few weeks, I need to attack that small mountain of bills. I'm hoping the window between now and my next chemo treatment lasts long enough for me to make some progress on this. Somehow, I've got to sort out which bill matches up with which EOB, check them both over for errors, and begin to make payments.

Is it therapeutic to have to do this when you're sick? Hardly. But what choice is there? It's not only the doctors who are all wrapped up in chains like Marley's Ghost. The patients are, too.

Friday, January 27, 2006

Only one letter separates them. But they're closely related in other ways.

Not long ago – using a gift certificate the church had given me, in celebration of my 15 years here as pastor – I bought a book I've always wanted: The Shorter Oxford English Dictionary. ("Shorter" is a relative term when it comes to this dictionary's two very thick volumes, but it's still a far cry from the 16-volume complete OED.) I've long wanted to own this treasure trove of information about word origins.

Word origins are a hobby – some would say an obsession – of my brother Dave, who's got his own website devoted to this subject, and has even published a book, Word Myths, on "linguistic urban legends." So I'm aware that what I'm going to say here about "care" and "cure" is strictly an amateur effort, compared to the sort of thing he does.

My Shorter OED tells me the word "cure" is derived from the Latin cura, which means "care for." We can also see that old Latin word pop up in the word "curate" (a priest who cares for the needs of a parish), and in "curator" (someone who guards and oversees a museum's collections).

Yet the modern word "cure" means more than just looking after someone's needs. It means bringing about a change in the person, from sickness to wellness. That meaning is similar, I suppose, to another sense of the word "cure": creating a chemical change in something in order to preserve it – as when a tanner "cures" a piece of leather, or a farmer "cures" a ham by smoking it.

And what of our English word, "care"? The origins of that word are completely different. "Care" doesn't come from the Latin at all, but rather from the Germanic family of languages. The Saxon or Old Norse root of "care" is a word describing a wail of sorrow or grief. Think not so much of a nurse calmly spooning medicine into the mouth of a bedridden patient, but rather of some horned-helmeted Viking, roaring in grief at the sight of a fallen comrade. To care, in the oldest sense of the word, is to have your emotional equilibrium shattered.

Yet these two similar-sounding words, different as they are in their origins, are still linked together in some remarkable ways. How are patients ever cured of their illnesses unless someone also cares for them in the emotional sense? Sure, scientifically-based medical treatments are vital to healing, but they've got to be seasoned with love if they're to be fully effective.

Rachel Naomi Remen, author of Kitchen Table Wisdom, has something to say about this. She's a medical doctor who for years has specialized in treating the emotional needs of cancer patients. One of her patients, a man named Dieter, had reached the end of the road of his chemotherapy treatments. They were no longer making any difference, medically speaking. As he conferred with his oncologist about the wisdom of stopping treatments, he asked the doctor – whom he liked very much – if he could continue to come in and meet with him, anyway, just to talk. The doctor became visibly uncomfortable. "If you refuse chemotherapy," he explained curtly, "there's nothing more I can do for you." Reluctantly, Dieter elected to continue receiving his weekly injection, for this was the only way he could keep seeing his doctor.

Explaining his decision to a cancer support group sometime later, Dieter lamented, "My doctor's love is as important to me as his chemotherapy, but he doesn't know."

That would be a compelling story in itself, but there's more. Let's let Dr. Remen herself continue it:

"Dieter's statement meant a great deal to me. I had not known, either.... Medicine is as close to love as it is to science, and its relationships matter even at the edge of life itself.

But I had yet another connection to Dieter's story. His oncologist was one of my patients. Week after week, from the depths of chronic depression, this physician would tell me that no one cared about him, he didn't matter to anyone, he was just another white coat in the hospital, a mortgage payment to his wife, a tuition check to his son. No one would notice if he vanished as long as someone was there to make rounds or take out the garbage. So here is Dieter, bringing the same validation, the same healing to his doctor that he brought to me, but his doctor, caught up in a sense of failure because he cannot cure the cancer, cannot receive it." (Kitchen Table Wisdom; Riverhead, 1996, p. 65)

Caring and curing: they’re intimately related, in ways most of us can only begin to imagine. I feel very fortunate indeed to have a family, a church community and a team of medical practitioners who care for me deeply, even as we work together toward achieving a cure – or, in the case of my NHL, at least a remission.

Thursday, January 26, 2006

Today I’m catching up on some e-mails, and am reading some encouraging words written to me by Anne, a friend from our college days. Anne’s a nurse who has cared for cancer patients, and has even taught nursing to others. She lost both of her own parents to cancer. So she knows the score.

I’ve had so many wonderful contacts, in recent days, from friends like Anne – people with whom Claire and I were once very close, but from whom we’ve drifted away. It’s an inevitable process, I suppose. The years go by, geographic separation takes its toll, children come along and the sheer dailyness of life piles up all around us like mine tailings. Under the cumulative weight of such pressures, it’s all too easy to let significant friendships dwindle into a dormant state.

The news of my illness has been like a gentle breeze blowing across the sputtering flame of some of these neglected relationships. I’ve discovered that the caring and concern we once took so much for granted are still very much present. We can fan the flame. We can pick up where we left off. And that’s been a great source of strength.

I’m realizing that, for many of these friends, I’m the first of their peers to come down with a life-threatening illness. I’m 49 years old: firmly ensconced in mid-life, but still not so old that casual conversations naturally turn to subjects like heart catheterizations and prescription drug plans. People in their forties aren’t supposed to get cancer. Not only does it seem unfair, but in some way it even seems illogical.

I am of the generation that swayed, in blue jeans worn out at the knees, to the words of Ecclesiastes, chapter 3, as sung by the 1960s folk group, the Byrds:

“For everything,(turn, turn, turn)there is a season,(turn, turn, turn)and a time for every matter under heaven.A time to be born, a time to die...”

What were we thinking, as we nodded our heads to that lyrical melody on Top 40 radio? Did we have any conception of what those words mean – of how dark and brooding is their theology?

“What gain have the workers from their toil?” implores Qoheleth, “The Teacher” (Ecclesiastes 3:9). He really wants to know. What is life for, he muses, if it can come to an end so capriciously? Overwhelmed by this mystery, seemingly too deep for human understanding, he concludes, “there is nothing better for them than to be happy and enjoy themselves as long as they live; moreover, it is God’s gift that all should eat and drink and take pleasure in all their toil” (12-13). It’s not all that different from the sappy sentiment of that old beer commercial: “You only go around once in life, so you’ve got to grab for all the gusto you can.” The only difference is that, for Qoheleth, God’s the one working the beer tap.

Perhaps Qoheleth’s darkest moment comes in these words: “I said in my heart with regard to human beings that God is testing them to show that they are but animals. For the fate of humans and the fate of animals is the same; as one dies, so dies the other. They all have the same breath, and humans have no advantage over the animals; for all is vanity. All go to one place; all are from the dust, and all turn to dust again” (18-20).

There have been times when I’ve wondered why these gloomy words are in the Bible at all. What is it about the philosophical meanderings of this tortured soul that led the compilers of the Hebrew canon to declare them holy scripture?

Our friend Anne seems for a moment to be on the same page as Qoheleth:

“For me (and I wonder if it is this way for you) the real sticking point is trying to figure it out. The ‘Why?’ As a person of religion and philosophy I’m sure you are well versed at pondering completely unanswerable questions. But now you are at the very center of the question. While our nature is to seek and find meaning in our human experiences and existence, our frustration is most often simply increased as questioning often leads us to even murkier waters.”

But Anne’s got a lot more going for her, faith-wise, than old Qoheleth apparently did:

“It is in the struggle with these questions, however, that the love and support of family and friends, the fellowship of others is most reassuring. If it is not more powerful than the chemicals we have designed to fight disease, it is at its very simplest, more sustaining and meaningful for sure. I know I feel comforted that on some level the inherent goodness of us as human beings is more important, more powerful and more significant than my life and my life’s work could ever be on their own. For me, faith is most tangible as a belief in God’s work through humankind.”

There’s an old story about Francis of Assisi. One day he informed his fellow friars that he intended to go into a nearby village on a preaching mission. He invited one of the novices to accompany him. On their way, they passed several poor, homeless folk who were in need, and each time, Francis stopped to help.

So it went, all through the day: one interruption after another. The sun was low in the sky when Francis told his companion it was time for them to return for evening prayers. But the young man objected: “Father, I thought you said we were coming into town to preach to the people.”

Francis only smiled. “My brother, that’s what we have been doing all day.”

On another occasion, Francis puts it even more succinctly: “Preach the gospel at all times. When necessary, use words.”

Thank God for friends like Anne, who reach out across the years with words of caring and concern: words that point to a God of love, who really does care about chemotherapy and white blood-cell counts, about comfort and friendship, about life and death!

Wednesday, January 25, 2006

It’s one week to the day after my first chemotherapy treatment – so, first thing in the morning, I drive over to Dr. Lerner’s office for a blood test.

The procedure is the same as before. I’m led into the small room that I’ve been calling “the bloodletting room.” The phlebotomist greets me, pokes my arm, and extracts a test-tube full of blood (I’m getting very used to this routine by now). Then, as I hold a wad of gauze against the inside of my elbow, she turns to a nearby counter, on which sit two identical, gray machines – each about the size of those automatic bread-making machines that some people have in their kitchens.

With well-practiced motions, she pops the test tube into a little door on the front of one machine, presses a touchscreen, and – Presto! – a computer printer spits out two copies of my CBC (Complete Blood Count) report. It only takes about a minute.

One copy is for me to take home, the other for my medical file. Next, I’m sent down the hall into “the Nurses’ Room”: a larger room with glass-front medicine cabinets and a half-dozen patient chairs in a row against one wall. I’m the only one in this room at the moment – although, when I was here for my Neulasta shot last week, nearly all the chairs were filled with patients waiting to receive medication of one sort or another.

I hand over my file to Diane, the nurse who gave me my chemo medicines last week. A quick glance at the CBC report confirms “everything’s fine”: the levels of my white cells, red cells and platelets look just as healthy today as they were on the day I started my chemotherapy.

This is not likely to last, Diane warns. It’s a rare CHOP chemo patient who gets through all six treatments without experiencing a plunge in one or more of those key indicators. But for now, there are no restrictions on my activity. I can do as much or as little as I feel like doing.

I ask about hair loss. “Early next week” is the answer. Most patients lose their hair about 13 days or so after the first treatment, which for me would be Monday. But still, it’s hard to predict. Some patients take a little longer to lose it – in a few cases, not till after the second chemo treatment. It starts gradually: a few hairs on the pillow, or in the bathtub drain – though once it starts, it’s time to take action. Those hairs on the pillow are an early warning to get to the barber shop, or do whatever else is needful to prepare.

I walk outside into an amazingly warm and sunny day, for late January: the forecast today is for a high of 45 degrees Fahrenheit (7 Celsius). I get into the car, feeling encouraged – grateful for a beautiful morning, and for treatment that is (at least for the moment) very tolerable indeed.

Tuesday, January 24, 2006

The prednisone rush was an odd and somewhat disturbing ride. It lasted into yesterday evening. Hot flashes, feelings of agitation, nagging hunger, difficulty concentrating – all these were the cumulative effects of those four days of heavy medication. Yet by bedtime, life had pretty much returned to an even keel.

This morning I awake feeling rested, and generally more upbeat and confident. Based on what I’ve been told about typical responses to chemotherapy, I’ve been envisioning a slow and steady slide downwards in terms of energy. Maybe it’s the aftereffects of the prednisone, or maybe it’s just that my personal pattern is different, but things seem to be working out a little better for me today.

I’m not practiced at listening to what my body is telling me. Not many of us are, in this culture. We tend to think of the body either instrumentally – as a tool for doing things – or we think of it aesthetically, as something whose main purpose is to be superficially attractive to others. Advertisements invite us and our neighbors to open our wallets and spend money on body-building (Gym membership!) or body-beautifying (Complete makeover!) – but there’s precious little emphasis on living in our bodies, simply and with self-awareness.

What is it that leads me to trust a medical prediction, based on mathematical averages, rather than my own intuitive sense of who I am and what I’m feeling? It’s so easy to lose touch with this physical home of ours – this “earthly tent” in the words of 2 Corinthians 5:1. Yet God has set us in this world as embodied individuals. The boundary-line between flesh and spirit is not so distinct as we sometimes imagine it to be.

Sister Mary José Hobday has spent a lot of time exploring the intersection between Native American spirituality and Christianity. She tells a Native American tale of how, at night, the shadow that follows us around in the brightness of day sometimes detaches itself and goes wandering around on its own. Sometimes the shadow becomes so intrigued by what it’s experiencing that it loses track of time. For that reason, it’s important – just before arising from bed – to softly hum a song that only the shadow will recognize, to guide it home. If a person forgets to perform this simple ritual, it’s possible that the shadow may not return for a while. Then, the day to come will be exceedingly difficult. (Cited in Frederic and Mary Ann Brussat, Spiritual Literacy; Touchstone, 1996, p. 379.)

Monday, January 23, 2006

For each of the past four mornings, I’ve been taking my prescribed daily dose of the steroid prednisone – 100 mg, which I’m told is a pretty significant amount. I’m done with that now, until my next round of chemo: which is a good thing, because today I’m starting to feel the side effects, and they’re not pleasant.

The first thing I noticed was increased appetite. Feeling vaguely nauseous for the past three or four days, I’ve had little interest in food – until last night, when Claire, Ania and I were sitting in the living room. Ania went off to finish her homework, leaving a half-finished snack bag of cheese doodles on the coffee table. Suddenly I felt like nothing would taste better than a couple of cheese doodles. Next thing I knew, I’d finished the bag. This morning, I made myself a big breakfast of oatmeal, eggs and couple leftover pancakes. Lunch was a frozen portion of lasagna, a buttered bagel and a handful of cookies. I could have eaten much more, but held back out of a sense of caution (the memory of the last few days is too recent).

This is still not a huge amount of food, but compared to what I’ve been eating in the past few days, it’s a feast.

More troubling are the psychological effects of the medicine. This morning I awoke at 5:00 a.m. and couldn’t get back to sleep. I’m jittery, filled with nervous energy, and am feeling anxious about a host of unfinished tasks. But even with all that energy, it’s hard to focus. I’m spinning my wheels: jumping around from one task to another, without getting closure.

I think it was Superman who said to Lex Luthor, or some other comic book villain, “If only he could use his power for good!” That’s the way I feel about my newfound prednisone powers: if only I could channel them – such as in the direction of that stack of unpaid bills I’ve been meaning to get to...

Sunday, January 22, 2006

Bone pain. Vanessa in Dr. Lerner's office told us it affects some NHL patients more than others. Now it's here.

It awakens me in the wee hours of the morning. It's a dull ache – more of a nagging pressure, really, than any actual pain. I feel it right where Vanessa predicted I would: in the pelvis and femur, the largest bones of the body, the places where there are the largest concentrations of marrow.

The marrow-filled centers of these thick bones are the body's blood-cell factories. The Neulasta shot I had on Friday is supposed to jump-start the production of white blood cells, and that – I hope and pray – seems to be exactly what's happening.

The silence of the cavernous, World War 2 aircraft factory is shattered, as the foreman throws the switch on the mercury-vapor lamps that sizzle for a moment, then burst into light. The doors crash open, and hordes of third-shift Rosie the Riveters pour in, clad in their overalls, to keep the B-29s rolling off the assembly line around the clock. It's an ungodly hour to be working, but there's nothing to be done about it. There's a war going on – a war against cancer.

Yes! I say to myself, as I shift position in bed, trying to get more comfortable. The treatment's working. The war birds are rolling off the assembly line. The white blood cells are under construction.

I'm developing a somewhat different attitude towards pain as I journey, day by day and night by night, through this disease. Normal thinking is turned on its head. It's not the lymphoma that's causing me the pain, fatigue and nausea. It's the treatment.

The lymphoma is a wily, stealth attacker, silently soaring without lights like some teflon-covered spy plane, insinuating itself into my very DNA. It's not the assailant, but the treatment the doctor's administering to fight the assailant, that's making me uncomfortable.

I'm a relatively unusual NHL patient, in that my disease was diagnosed accidentally, before I'd developed any symptoms. As we first sat down with Dr. Lerner to talk about chemotherapy, I was very much aware that I'd been walking around performing all my normal activities. Sure, in retrospect I could recall that something hadn't been right for a while – I'd been feeling a little tired, and I was getting concerned about a vague, tight feeling in my abdomen (the same feeling that could have subconsciously inspired me to ask Dr. Cheli, our family physician, about an aortal aneurysm) – but these feelings were barely on the radar screen for me. They weren't interfering with my life.

Yet in signing up for a treatment regime that includes the surgical insertion of what is, essentially, a high-tech funnel so noxious chemicals can be poured into my body, altering the fundamental structure of my cells, I was volunteering for hardship duty.

And so, when the pain comes, I take it as a sign that I'm getting better. Any other pain would be exactly the opposite. The lingering pain from my porta-cath surgery, for example, is slowly diminishing day by day. When I stand in the shower and lift my right arm, I can feel the swollen scar tissue pulling. Yet, with each day that goes by, the pain from that wound is incrementally less, and I celebrate its diminishment.

Not so with the bone pain, nausea and fatigue brought on by the chemotherapy. As each day unfolds, bringing me closer to my nadir point ten or eleven days after receiving the drugs, the discomfort can be expected to increase. While I dread the mounting side effects because of the way they'll make me feel, there's also a part of me that wants to cheer their progress.

It's a kind of therapeutic pain – and therefore, it defies the usual logic of pain. I need to go through this, I tell myself. I need to endure it. It's going to make me well.

In one of the strangest and most oddly beautiful poems ever written in the English language, the Elizabethan-era Anglican priest John Donne invites God into his life with an almost masochistic glee – not to comfort him, but to assault him:

"Batter my heart, three person'd God; for, youAs yet but knocke, breathe, shine, and seeke to mend;That I may rise, and stand, o'erthrow mee, and bendYour force, to breake, blow, burn and make me new."

Saturday, January 21, 2006

Except for the Thursday-morning staff meeting, I've stayed home all week, communicating with people by telephone and e-mail, doing what ministry I can in vicarious ways. My main goal has been preaching tomorrow, at our Sunday services. I've figured that I could probably pace myself well enough to get through those two one-hour worship services, even if I had to go home and crash immediately afterwards.

What I haven't counted on is the progressive deterioration of energy that is the result of the chemo treatments. I've heard our friends Don and Charlotte talk about this, and have grasped the concept in the abstract, but somehow I didn't fully understand what it feels like until now, as I'm living through it, day by day.

If I felt tomorrow the way I felt yesterday, I could have done it. But I knew almost immediately, after getting up this morning, that I felt just a little bit worse. With the known effects of the medication, I can expect to feel incrementally worse tomorrow, and the next day, and the next – until I finally reach that nadir point, after which I can expect to gradually feel better.

So I've asked Claire to activate our backup plan, and preach for me tomorrow. She's a Presbyterian minister like me, but works as a hospice chaplain rather than in a local church. She does a fair bit of supply preaching among the churches of Monmouth Presbytery, filling in for ministers on vacation. There was a time, before Robin was called as our associate pastor, when Claire was on the paid staff of our church, so our people know her well – not only as their pastor's wife, but also as a minister in her own right. She's a very good preacher, and will do a fine job – I have absolutely no worries there.

It's just so hard to let go. More than any other ministry activity, preaching is what I do. It's at the heart of my personhood and sense of calling. If God has called me to do this work, then why would God call me out of it for a time – not to do something else, but rather to just be sick? It's a mystery.

Two summers ago, I had a wonderful, three-month sabbatical, funded by a generous grant from the Lilly Endowment. I spent time at a Benedictine monastery in New Mexico, went away to our cabin in the Adirondacks for a number of weeks to work on some writing projects, and traveled with Claire and Ania to Ireland and Scotland. After nearly fifteen years of serving this church, it was good to get away and focus my energies on some other things for a season. The terms of the Lilly grant provided some money for the church to hire a retired minister from our Presbytery to fill in and assist Robin with various tasks, so my temporary absence wasn't too much of a burden to others.

But this is different. There's no sabbatical grant to pick up the slack. My absence is surely beginning to be a burden on others. But it is what it is. I'm grateful that the church staff and leaders have been so understanding, and so willing to go the extra mile to cover for me.

In 2 Corinthians 12, the Apostle Paul speaks of a mysterious "thorn in the flesh" that tormented him for a time. No one knows what he meant by that phrase, exactly, but it was evidently some physical complaint that was very troubling. He turned to God in prayer: "Three times I appealed to the Lord about this, that it would leave me, but he said to me, ‘My grace is sufficient for you, for power is made perfect in weakness.' So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me" (2 Cor. 12:8-9).

I'm not doing much boasting these days, and certainly not of my weaknesses. But maybe someday, by God's grace, I will learn how to do so.

Friday, January 20, 2006

After a quick trip to the doctor’s office for my Neulasta injection (the drug that fights the chemo drugs’ suppression of white blood cells), I return home for a meeting with Lynn, a member of our church who’s a licensed dietician and counselor. She’s offered to help me look at some dietary issues.

Lynn sits down with me in our living room, takes out a pad and begins asking questions about my dietary habits and preferences – both before I began treatment, and in the last day or two as I’ve been starting to experience the chemotherapy side effects.

I confess some of my past sins – too much fast food, a fondness of potato chips and late-night ice cream snacks, and overeating generally. These have led to problems with obesity that have plagued me all my life. I’ve never been a binge eater, but as a baby-boomer child I so internalized my Depression-era parents’ strictures about cleaning my plate that I’ve tended to keep eating till well past the point of fullness. But now is not the time to address those problems. The goal of a chemotherapy diet is to maintain weight, because unhealthy weight loss is such a common result of the chemo medicines themselves (not to mention the feelings of nausea that suppress appetite).

Actually, if I do manage to lose some weight as a result of all this, that would probably be the only thing that could be said in favor of undergoing the rigors of chemotherapy. (I remember reading somewhere about a cancer survivor who used to joke about her very successful $30,000 diet program.) But Lynn and I are agreed – the immediate health concerns of maintaining caloric intake, protein and vitamins are paramount.

Vanessa, the nurse in Dr. Lerner’s office who gave Claire and me our orientation to chemotherapy, touched on some dietary issues – mostly around subjects like preventing mouth sores and avoiding infections. I’ve been following her instructions of using a homemade salt, baking soda and water mouthwash six times daily, and am ready to cut out orange juice and other acidic foods at the first sign of sores. I’m also avoiding all mouthwashes that contain alcohol, and have switched to a soft-bristled toothbrush. Vanessa also instructed that, in times when my white blood cell count is down, I should follow standard traveler’s instructions for eating raw fruit in tropical countries – eat only what fruit you can peel. In times of severe stomach upset or diarrhea, Vanessa recommends the “BRAT” diet – bananas, rice, applesauce and toast.

Lynn’s advice is more comprehensive, and oriented to the day-to-day decisions that need to be made in the supermarket and the kitchen. She starts with my past eating patterns, and encourages me to build on my strengths. I’ve never been a breakfast-skipper, for example. Since – in the past few days, at least – I’ve found that my appetite is strongest in the morning, she encourages me to start with a big breakfast. As for the rest of the day, she encourages me to eat frequent, smaller meals – keeping a little something in my stomach all the time, to prevent queasy feelings. I also need to minimize fatty foods that are harder to digest. Lynn explains that dairy products can also be hard to deal with in times of nausea and diarrhea, so she encourages me to try soy milk instead. Yogurt is OK, too, as long as the container says “active yogurt cultures.”

In times when eating is very difficult, she encourages me to try making some fruity blender shakes, with soy milk, honey, fruit juices, banana and a little wheat germ.

Tomato-based foods are out, because of mouth-sore issues and also because they can cause stomach upset. I should also avoid very spicy foods.

In times of nausea, it’s a good idea to stay out of the kitchen while food is being cooked, as food odors can cause lack of appetite. Better to have some pre-prepared meals that can be heated up quickly in a microwave.

I show Lynn a booklet Vanessa gave us, published by the National Cancer Institute. It’s called Eating Hints for Cancer Patients: Before, During and After Treatment (U.S. Department of Health and Human Services, 1997), and is also available online. Lynn pages through this, and gives it her seal of approval.

Because she’s also a member of the church, Lynn offers to get some volunteers together to bring our family some prepared meals. While it feels odd to be on the receiving end of this sort of kindness, I put my pride aside and agree. Because of my flexible schedule, I’ve been doing nearly all the grocery-shopping, and have also taken my place in our weekly family cooking rota. Now that I’m sick, I won’t be able to help in these ways, and Claire’s hospice-visitation schedule often keeps her busy into the late afternoons and sometimes evenings. Yes, some ready-to-cook meals would be a help.

I explain the further complexities of food issues in our household – how Ben, Ania and our nephew Cory are vegetarians, and Claire is more of a vegetarian by preference than principle, but I’m most emphatically not. This has made meal planning inordinately difficult for the past couple of years, ever since the kids announced their dietary scruples. Some of the entrees people would ordinarily be inclined to bring as meals-on-wheels offerings (one-dish casseroles with bits of meat cut up in them) would probably end up being wasted. If there’s meat, it would have to be kept to the side, for me to add later to my portion. Add to the mix my newfound issues with tomato sauces and spicy foods – which our family generally loves, but which I have to swear off – and things get pretty complicated. Lynn says she’ll explain all this to the people she talks to.

She leaves me with her list of written suggestions, and encourages me to stay in touch. It’s good to know I’ve got an ally like her, who can help us chart a simple and healthy course.

I go into the kitchen and make lunch – scrambled eggs and toast. I’m feeling tired, but I also feel inspired by Lynn’s suggestions, so I decide to head off to the supermarket. I know I could just make Claire a shopping list and she’d cheerfully pick up whatever I need, but somehow I feel the need to push the cart up and down the aisle myself, look at what’s on the shelves with a new eye, and think carefully about what sorts of foods appeal to me now. Besides, I know that once I’m into that second week after treatment – the “nadir,” they called it, back in Dr. Lerner’s office, when I’m watching my blood counts fall (and my hair, besides) – I probably won’t have the inclination or energy to walk down a supermarket aisle. So, it’s now or never.

I’m struck with how many shelves I pass by, with hardly a second thought: milk, cheese and other dairy products, Italian tomato-sauce dishes, anything spicy – these no longer have any appeal. It’s not like going on a regular diet. When trying to lose weight in the past, I would mournfully pass up whatever forbidden fruit was on the list (well, it was rarely the fruit that was forbidden). Now I simply don’t want the things on my new blacklist: I intuitively know that these foods would make me feel even sicker. I reach for the soy milk, the yogurts, the little lunchbox containers of applesauce, the bland, starchy items like couscous and cream of wheat – and am thankful to have them available to place in the cart. Over in the frozen-food section, I select a few bland, ready-made meals like chicken and rice – good for those occasions when the family is dining on take-out pizza or Mexican food and I must abstain.

The supermarket looks very different to me now. I’ve always been very aware that we Americans have an absurdly large range of food choices in general, compared to the Third World – but now I feel a little like I’ve joined a sort of chemo Fourth World. It’s just one more way that cancer can be an isolating experience.

Thursday, January 19, 2006

My first day after my first chemotherapy is a day of peaks and valleys. I sleep rather well until about 4:30 a.m., after which I can’t sleep any longer. I get up and go sit in front of the computer, intending to read through some e-mail. I quickly get distracted by some cancer-information websites – as Broyard says, something about this illness is intoxicating – where I rather obsessively look up more details about drug side-effects. Before I know it, Claire and the kids are stirring.

Claire helps me tape a plastic Baggie over the surgical incision, so I can take my first shower since the surgery (I was told to wait at least 24 hours, which have now passed, but I still want to keep the wound as dry as I can). It feels good to get clean again, and it feels even better to come downstairs and eat a bowl of oatmeal Claire prepared for me (usually I get my own breakfast, but if one of the few advantages of being sick is having people wait on you, I’ll take it).

Then, it’s upstairs to the bathroom again to take my morning cancer meds – the allopurinol and, for the first time, the prednisone. I’m supposed to take five of these daily for four days. I gulp them down, one by one, noting a slightly bitter taste – but then the bitterness seems to linger and intensify at the back of my throat. I’d been told these things were kind of nasty, and now I see why. The taste dissipates after a few minutes, though, and a little while later I feel good enough to walk across the street to the church in time for our weekly staff meeting.

The folks there are a little surprised to see me. They know what’s been going on, from reading my blog and talking to each other, but they also know we’re playing this thing one day at a time. We open with prayer, and go through our usual routine of comparing calendars and offering each other a chance to bring up matters of concern. I find I have to excuse myself a couple of times for quick trips to the rest room, as my body continues to try to flush the chemo meds out of my system. (Gosh, I think to myself, if I’m trying to lead worship on Sunday morning and I’m like this, I’ll never get through the one-hour service without a rest-room break, maybe even two!)

By the time we get to the time at the end when Robin and I typically spend some individual time together, I’ve got another problem. Suddenly, I’m feeling wiped out. It’s about 10:30 a.m., and I can hardly keep my eyes open. She and I handle our most essential business, before I excuse myself and go home to spend a couple of hours lolling on the couch in front of the TV. I’m not tired enough to sleep, but I’m not energetic enough to do much of anything. Not only that, I start to feel a bit queasy, so I take one of the compazine tablets (my backup anti-nausea medicine). The feeling passes, but I’m left with a nagging headache. Always a trade-off, it seems, when you’re taking medicines to offset the effects of other medicines.

If this is what my chemotherapy season is going to be like, It’s going to be a long four and a half months. So far the Aloxi (and now the compazine) seem to be doing their job of fending off the nausea, allowing me to achieve a sort of gray equilibrium. I don’t feel terribly sick, nor do I feel like I’m really living. And this is just the beginning. They say the second week after the chemo treatment is the worst.

Short bursts. Maybe that’s the only form of energy I’ll have. If I can’t predict when they’ll come or for how long, though, it’s going to be hard to lead anything resembling a normal life. That means others won’t be able to depend on me. I’ll show up when I can show up, and do what little I can. That’s not the way the super-responsible me is used to living.

Yesterday I was sitting in the chemotherapy lounge chair, fitfully reading a book I’d brought with me. It’s called Now That I Have Cancer, I Am Whole, by John Robert McFarland (Andrews and McMeel, 1993). A friend and colleague in ministry, Suzanne, sent it to me. The author is a friend of hers, a Methodist minister who’s a colon cancer survivor. Suzanne told me John intentionally made the readings short and pithy – just right for reading during chemotherapy, he told her. One of the meditations is called by the rather humdrum title, "...I do something each day." In it, the author muses – as I have been musing today – on how little he can do: "something every day," he says, is about the only goal he can manage. Here’s more:

"My ‘something’ each day is now more important than the masses of things I used to do. Whether I live long or short, in pain or without pain, I have one thing to do each day, regardless of how many ways that one thing may be expressed. Into each letter, each phone call, each washed dish, I put the full measure of all my love. I think by doing well, I’m helping myself get well, but that’s not the point. Soren Kierkegaard wrote that ‘purity of heart is to will one thing.’ Whether it’s a home run or a sacrifice bunt, my turn at bat is to do one thing, to love."

Wednesday, January 18, 2006

A night of sleep has worked wonders for me. I’m not exactly energetic, the morning after my surgery, but the porta-cath incision feels less painful. Claire and I drive over to Dr. Lerner’s office for our 9:20 a.m. chemotherapy appointment.

The first person we see is Diane, one of the chemotherapy nurses. Diane finds the porta-cath under my skin without too much difficulty – Dr. Gornish, the surgeon, has very helpfully penned an “X” to mark the spot – and inserts the IV needle. It hurts just a little more than the arm-pricks I’ve been getting, and she assures me that, once the surgical wound is fully healed, I’ll feel even less pain.

Dr. Lerner meets with us then, and explains the chemotherapy in detail. I learn that I’ve already made my first medication mistake: evidently I was supposed to start taking the allopurinol (the gout-preventing medicine) a couple of days before the first chemo treatment, not on the day of the treatment. Claire says she recalls this instruction, but I sure don’t: brain overload, I think. Dr. Lerner says not to worry: just take one today and double up with a second one this evening, then return to the daily dose. He’s evidently not going to stop this chemotherapy train, now that it’s finally ready to leave the station. We’re close enough to home that I ask Claire to drive and get the allopurinol prescription bottle for me, so I can take it that much sooner – and she very helpfully does so, before heading off to work.

When we’re finished talking with Dr. Lerner, Diane leads me back to a small room, equipped with a comfortable lounge chair, IV pump and a television/VCR player. There’s a nice view out the window, looking across to the Silton Swim School, the pool where our daughter, Ania, took her swimming lessons years ago (although on this blustery, rainy winter day, who’s thinking about swimming?). I will soon come to appreciate the lounge chair with its electric-powered recliner and the television set: I’m going to be in this chair for more than eight hours today. (The chemo patient in the chair pictured here is nobody I know; it's just a photo I found in a Google image search. The chair looks just like the one I was using.)

First comes Benadryl, the antihistamine, administered through a small IV drip bag. This is to minimize possible allergic reactions to Rituxan. Next comes Aloxi, an anti-nausea medication, injected directly into the IV line. This is supposed to give me five days or so of anti-nausea protection. I sure hope it works.

Then comes Rituxan, the monoclonal antibody therapy. This takes by far the longest time of any of the medications I’ll receive today. Dr. Lerner has explained that the first Rituxan treatment must be administered gradually, so as to avoid the fever-and-chills side effects that often afflict first-time patients. Sure enough, after an hour or so of the medication I start to feel warm. When I tell Diane about it, she backs off the medication for a while, then re-starts it at a lower level. Throughout the rest of the day, the chemo nurses will gradually ramp the dose up, so as to empty the entire IV bag, carefully checking me for fever symptoms all the while.

I sit in the chair and try to read, although I feel exhausted and spend a good bit of time dozing. I read in dribs and drabs, watch some television and doze some more. Because the staff has been encouraging me to drink plenty of fluids, I need to make frequent trips down the hall to the bathroom, calling the nurse to unplug the IV pump, so I can push it ahead of me down the hall. I feel like a little kid again, having to ask permission to go to the rest room.

We’ve been clued in to bring a lunch, so from time to time I dip into the lunch bag Claire helpfully packed for me. I’m not feeling like eating very much, so I space it out through the whole afternoon.

Finally, close to 5:00 p.m., the Rituxan is finished. Now, on to CHOP. This takes far less time than I expected. Two of the CHOP medications, adriamycin and vincristine, are administered directly into the IV tube, using a large syringe. Kay (the late-shift nurse who’s taken over from Diane) explains that she has to be very careful with the bright red adriamycin, because if it should spill onto the skin, its caustic effects can cause burns so severe that plastic surgery could be required. I wonder how the stuff doesn’t cause harm to the veins through which it passes – although I suppose it’s sufficiently diluted by the blood at that point.

Claire comes back in about the time I’m starting to receive the third chemo medicine, cytoxin. This stuff comes in a smaller IV drip bag, and it takes much less time to empty this one. This one irritates the bladder, Kay tells me, so I’ve got to keep pushing the fluids after I go home. The fourth CHOP medication, the steroid prednisone, is in pill form; I’ll start taking that one tomorrow morning, at home, and continue it daily for four days.

We finally finish at about 6:30. The last thing I do is make an appointment to return briefly to the office on Friday morning for an injection of Neulasta, a medication that encourages the production of white blood cells (a necessary corrective to the chemotherapy, which by then will be starting to depress the numbers of those cells).

After today, I’m more aware than ever what a slow-motion cure chemotherapy is. It took me a solid day just to receive the medications (although Diane assures me that, now that my body is used to Rituxan, future treatments will go more quickly). It’s going to be three more weeks till the next one. In the intervening time, I’ll come to experience the side effects: perhaps some nausea after the five-day dose of Aloxi wears off; hair loss beginning around day 13; and whatever other treats I may be in for.

I’m lying on a gurney in the Same Day Surgery staging area at Ocean Medical Center, with Claire by my side, as Robin, our church’s associate pastor, shows up. Her timing is perfect: I’m all ready to go into the operating room, to have the porta-cath implanted. For me, the prayer she offers is symbolic of a whole lot of prayers that are being offered for me today and tomorrow, by a whole lot of people. Thanks, Robin.

An orderly shows up, telling me it’s time to go. I say goodbye to Claire; the last thing I tell her is that I love her. (I fully intend to come back, of course, but it seems like the right thing to say under the circumstances.) Suitably attired for my journey in a hospital gown and one of those puffy, disposable hats with elastic around the bottom – as much of a hair net as it is a hat – I begin my brief trip through the hospital corridors.

My feet-first perspective from the gurney is an odd one. Everything – the smooth ride, the automatic doors that open at the touch of a button, my recollection of the friendly and efficient preparation by the Same Day Surgery staff I’ve just received – indicates that I’m now part of a vast and well-thought-out system. Human bodies are the focus of this system – living human bodies, transported on a journey of healing.

Although, as pastor of a local church, I know this hospital well, I’ve now entered parts of the complex that are completely unfamiliar to me: the backstage, “authorized personnel only” areas of Surgery. There’s a kind of anonymity to the people we pass in the hallways back here – attired as they are in surgical scrubs, most of them with masks still in place. Odd images flash into my mind, things I glimpse from the corner of my eye: a gray plastic box on a set of metal storage shelves on which is written “total hip,” a stack of similar plastic boxes, each of them labeled “foot.” Surely these contain some sort of surgical supplies, and not the Frankensteinian array of replacement body parts that immediately comes to mind. Funny thing about the medical profession – sometimes in order to achieve wholeness, there must be this relentless focus on the constituent parts.

They park me in the hallway outside the operating room, where I lie for a few minutes, fidgeting. Everything’s nearly ready, a nurse anonymously assures me from behind her surgical mask. I look to my right and see a small, glass-fronted wall cabinet beside me. Behind the glass door is an orderly column of stainless-steel tubes, tagged with colorful labels: “oxygen,” “hospital air,” “evacuation,” “waste,” “vacuum.” Everything’s got its designated conduit in the surgical system, right down to the gases and the bodily fluids.

They wheel me in, and I feel the same, much-colder temperature I recall from my two previous visits to operating rooms. (Why is it that operating rooms are always cold? I’ll make a mental note to ask someone about that, sometime.) Using a pneumatic foot pump, someone pumps my gurney up to the level of the narrow operating table to my right. When instructed, I slide over onto this “bed,” which is really more like a cloth-covered board. There’s no place to put my arms, I realize – but then a nurse swings over a couple of armrests, first for one arm then for the other. My position, now, is disturbingly cruciform. I try not to think of the associations.

To my left I see a technician in surgical scrubs and mask, sitting in the driver’s seat of some kind of wheeled device that reminds me, for some reason, of a forklift. When I ask what that is, someone tells me it’s an x-ray machine. I recall that Dr. Gornish had told me they would be taking a chest x-ray afterwards, to make sure the device has been placed properly.

The anesthesiologist, seated behind me, drapes an oxygen tube over my face. This is it, I think to myself. The moment of unconsciousness. It’s almost here. I stare up at the large lamp directly overhead, and wait.

At some point the anesthesiologist starts the drip going into my IV. The transition is so gradual (or maybe, so sudden) that I’m unaware of the precise moment I slip out of consciousness. At odd moments, though, I’m disturbingly aware of pain. I have distinct memories of wincing, and telling the operating room staff that it hurts – not once, but several times. The next coherent memory I have is of lying in the recovery room, and feeling angry about the pain. It wasn’t supposed to have hurt like that, I tell myself. I was supposed to be sleeping.

When I mention it to a nurse, she asks if I’d like to speak to the senior anesthesiologist about it – this is not the doctor who worked with me, but another doctor. I ask him about the pain, and he apologizes for my discomfort, but explains that the anesthesia is based on complex calculations that are made even more complex by my comparatively large body mass. I had "sedation," he explains, rather than full anesthesia with intubation (at least that’s what I think I recall him saying this next morning, as I write these words; my thinking was still a little foggy from the aftereffects of the stuff). They need to be very careful that I get just enough anesthetic, and not too much, the doctor explains. I’m left with the impression that the anesthesiologist took his best shot with the numbers, then as the pain pulled me briefly out of my twilight sleep, he made small adjustments to put me under again.

Later, Claire tells me that Dr. Gornish explained to her that the difficulty was related to my sleep apnea. The anesthesiologist, seeing that I had begun having apnea episodes, evidently cut back on the anesthesia a little bit in order to get me breathing again, which is when I began to feel pain. Mental note: whenever I have to undergo surgery again, I’m going to ask if there’s any reason why I can’t bring the BiPap machine (which I use successfully each night to prevent apnea) with me into the operating room. The BiPap’s plastic face mask does include a little valve to which an oxygen tube can be hooked up. I have no way of knowing whether this equipment is suitable for the operating room, but believe me, next time I’m going to ask very specifically about it.

Alternatively, it may be that, due to my sleep apnea, I’m not a good candidate for "sedation" anesthesia, but may require full intubation, which as I understand it keeps the airway open by its very nature.

Over my years of hospital visitation, I’ve heard other patients speak of this experience of waking up on the operating table – not many, but a few. I suppose I’m in that small, unlucky percentage. My memories of the pain are real, but fragmentary, and by the time I get home have become rather blurred. I sit up for a while watching television, my take-home ice pack draped across my shoulder so as to cover the area of the surgery near my collarbone. My head is throbbing from the Percocets I’ve been taking, "as needed." I decide that my "need" is now diminished enough to stop taking those. I’ve never had a very good reaction to that kind of pain-killer – although I know some addictive personalities swear by the stuff, and have made the tablets into a lucrative street drug. Frankly, I can’t see the appeal. Deciding to go it with Tylenol alone from here on in, I head for bed.

Monday, January 16, 2006

Today is the birthday of Martin Luther King, Jr., so I’m thinking about courage.

Somebody told me recently, at the church door, that she thinks I have a lot of courage in facing cancer the way I am. I appreciate the affirmation, but that’s not the word I would have chosen. I don’t feel especially courageous as I go about the business of preparing for treatment. It’s just what has to be done - and, if truth be told, I'm feeling plenty frightened about it.

It’s not uncommon for people to attribute courage to those fighting major illnesses – although I think that, in many cases, it may be more of a projection of the speaker’s own feelings and aspirations than a description of reality.

By the same token, when an athlete hobbles off to the locker room for treatment after being knocked temporarily senseless on the playing field, the stadium crowd typically responds with thunderous applause. Sometimes the sportscasters will say something like, “Just look at that the way that young man got up again – what courage!”

Is it really courage to get up again, after being knocked down? What’s the alternative?

True courage, I think, is when there is an alternative, and a person voluntarily chooses the course that could lead to suffering, for the sake of others. Often this suffering is an example of what Jesus calls, in the Beatitudes, “persecution for righteousness’ sake” (Matthew 5:10). Firefighters climbing the World Trade Center staircase: that’s courage. Soldiers going into battle to fight for worthy ideals and defend their comrades: that’s courage. A woman defying her abusive husband and seeking a restraining order to protect her children: that’s courage.

But seeking medical treatment, however painful or unpleasant it may be, in order to avoid even worse suffering – is that courage? I’m not so sure it is. It may be determination, or resignation, or even common sense – but it’s hardly courage.

Now what Dr. King decided to do each day of his life, in those last years – putting his life on the line to continue the struggle for justice – that’s courage. King knew the risks he was facing, as he acknowledged in a speech the day before he was assassinated:

“And then I got into Memphis, and some began to say the threats – or talk about the threats – that were out, what would happen to me from some of our white sick brothers. Well, I don't know what will happen now. We've got some difficult days ahead. But it doesn't matter with me now, because I have been to the mountaintop. And I don't mind. Like anybody I would like to live – a long life – longevity has its place. But I'm not concerned about that now; I just want to do God's will.... So I'm happy tonight! I'm not worried about anything! I'm not fearing any man! Mine eyes have seen the glory of the coming of the Lord!”

I hope I find sufficient courage to face my treatments and their side-effects with equanimity. Yet even if I don’t feel a sense of peace about it, I’m still going to undergo them. There’s no alternative. Such courage as I may find will surely be more of a gift from God than anything I already have in me.

These hymn stanzas (from William Cowper’s 1774 hymn, “God Moves In a Mysterious Way”) speak of courage as God’s gift:

Sunday, January 15, 2006

Today I’m thinking about a bumper sticker I see from time to time. It says, "Change is Inevitable. Growth is Optional."

For me, there surely are changes ahead. This morning I awoke in the wee hours and had a hard time going back to sleep, because those changes were preying on my mind. This coming Wednesday I’m going to spend the better part of my day sitting in a lounge chair in the doctor’s office, receiving 4 or 5 hours of Rituxan monoclonal antibody treatment, followed immediately thereafter by an hour or two of CHOP chemotherapy. As I get up from that chair to leave the doctor’s office, I will be a different person. I will have become a chemotherapy veteran.

Chemo changes the human body forever. The most widely-feared side effects of these medicines – fatigue, hair loss, nausea, mouth sores and the like – are transitory, but there is also the possibility of long-term effects. Some patients report that the fatigue associated with chemotherapy continues long after the treatments are ended. Both cyclophosphamide (also called cytoxan – the "C" in the CHOP acronym) and adriamycin (alternate name hydroxydoxorubicin – the "H") can damage the heart. Cyclophosphamide can also damage the bladder. Vincristine (or Oncovin – the "O") causes temporary neuropathy (tingling in the fingertips) that in some patients can become permanent. Prednisone (the "P") can permanently change the distribution of body fat, leading to changes in appearance. While only a minority of chemo patients experience any of these long-term effects, the possibility is still there.

Elizabeth Adler reports that, paradoxically, some of the lymphoma chemo treatments can themselves cause cancer further down the road (Living With Lymphoma, p. 90). This is truly ironic, but it’s a reality. A small but significant percentage of NHL chemo veterans will later come down with cancers like nonlymphocytic leukemia. Using these medicines is worth the risk, though, because the benefits of treating the lymphoma far outweigh the statistically much-smaller risk of secondary cancers.

Even though the chance of my undergoing permanent physical changes as a result of these drugs is relatively low, the possibility of those changes remains. And that in itself is a change. As a chemo veteran, I will forever after be inclined to wonder whether some future medical problem I experience is the result of my 2006 treatments. I’ll be like those Vietnam veterans who were sprayed with Agent Orange: I’ll never know for sure.

It’s also a fact that certain clinical trials (experimental treatments) are limited to those who have never received chemotherapy before. After this Wednesday, I will be ineligible for these. I will no longer be a chemotherapy virgin.

More than any other treatments I’ll receive in the future, I’m looking on this Wednesday’s experience as a threshold event. I will be crossing over into the world of chemotherapy, never to return.

I am reminded of a different spin on this whole issue of change as I read today’s blog entry written by my new friend Tarun Jacob – the young Indian physician who’s also receiving chemotherapy for NHL. After a "down" day of experiencing some pretty bad side effects, Tarun quotes the words of John Newton:

"I am not what I want to be.I am not what I hope to be.I am not what I ought to be.But still, I am not what I used to be.And by the grace of God,I am what I am."

Newton, of course, is best known as the author of the beloved hymn, "Amazing Grace." In that hymn, Newton famously describes himself as "a wretch" who – before coming to a renewed commitment to Jesus Christ – "once was lost, but now am found; was blind, but now I see." For some people to deploy words such as these would seem overly theatrical – but, considering the facts of Newton’s life, they're right on the money. For many years, Newton served as a mate, and later a master, on slave ships. In 1755, inspired by an experience of spiritual renewal, he quit the sea for good and eventually became an Anglican priest. He became a crusader against slavery.

My experience in undergoing chemotherapy will of course be very different from Newton’s in quitting the slave trade. Yet this much he and I will soon have in common. We will have crossed a threshold. I will then be able to say, along with him, "I am not what I used to be. And by the grace of God, I am what I am."

Saturday, January 14, 2006

Late this afternoon, Claire and I come to Dr. Lerner’s office to speak with him about chemotherapy. This coming Tuesday I'm going to the hospital to get the porta-cath put in, and Wednesday I get my first chemo treatment. So now’s the time to find out what’s ahead.

I learn more about chemotherapy than I ever expected to know. We have our list of questions, and Dr. Lerner patiently answers each one. He tries to be reassuring – and he is, by and large – but there’s no denying the fact that this is very strong medicine indeed. We learn even more from Vanessa, one of the chemotherapy nurses, who tours us through the part of the office where they administer the drugs, then loads us down with page after page of fact sheets about each medication I’ll be receiving.

We’re all used to reading those prescription ads in magazines – the ones with the photos of happy people that list, in tiny print, all the side effects that could make those people unhappy. We feel a little like that after leaving Dr. Lerner’s office. We’ve just read the small print.

The possible side effects are legion. Some are not just possible, it turns out. They’re inevitable. Like hair loss. Dr. Lerner’s very blunt: "You will lose your hair." (Three of the four medicines that comprise the CHOP chemo cocktail list hair loss as a likely side effect, so I’ve been figuring all along it’s pretty hard to dodge all those bullets.) Vanessa later tells us this isn’t just head hair: it’s body hair, facial hair, eyebrows and eyelashes. A few patients keep some of their body hair (like the woman Vanessa tells us about, who was looking forward to not having to shave her legs, but her leg hair turned out to be the only hair she kept). But most lose it all.

I can handle the hair loss, I think to myself. Sure, it will be emotionally wrenching the first time I hold a comb-full of hair in my hand, but right now it feels like it’s something I’m prepared for. Yesterday I went to the barber for a haircut, and worked it all out with him: as soon as the hair starts to go, I’ll come in and get a Marine Corps special. Most patients, it seems, choose to get their head shaved, rather than waiting for all the hair to fall out in clumps.

Then there’s nausea. Thankfully, the news seems to be a good bit better on that subject than I’ve heard in the past. Dr. Lerner tells me they now administer a powerful anti-nausea drug along with the chemotherapy infusion. It works for most people. Just in case it doesn’t, he hands me a prescription for another anti-nausea drug, which I can keep at home and use as needed.He also gives me a prescription for something called allopurinol, which I’m to take after receiving the chemo. If I don’t, uric acid may build up in my body, and I could come down with gout.

Fatigue is another big issue. Everybody who gets chemo, it seems, complains about fatigue to one degree or another. These drugs take a lot out of you.

Just to make things more interesting, prednisone – a steroid that accounts for the "P" in the CHOP acronym – can cause agitation and sleeplessness. So I suppose it ends up being like drinking a pot of Irish Coffee: uppers and downers at the same time. Are we having fun yet?

Dr. Lerner says that some people take prednisone and immediately experience a burst of energy, cleaning the house from top to bottom. Claire remarks that she wouldn’t mind if I got that side effect. No, I don’t suppose you would, I chuckle to myself.

Prednisone also results in puffiness and swelling, particularly around the cheeks. It results in the distinctive chemo moon-faced look. I could always get one of those zig-zag sweaters and start calling myself "Charlie Brown."

Along with the things patients feel are things they don’t immediately feel: changes in blood chemistry. Of the three principal types of blood cells – white, red and platelets – the CHOP chemo combination can (and typically does) eventually depress the numbers of them all. That can result in suceptibility to infections (low white cells), anemia (low red cells) and bleeding (low platelets). I’ll be coming in for weekly blood tests, so they can monitor what’s happening with my blood count, and respond appropriately with other powerful medications that can boost blood-cell production. During some of those low-immunity times, I may need to stay away from crowds – such as a Sunday-morning congregation.

One of my greatest concerns has to do with planning: will I be able to predict the down-times in advance, so I can arrange my church responsibilities accordingly? Dr. Lerner offers a few suggestions, but there are no real certainties. The side effects hit most people pretty hard, he says, but they’re able to maintain normal functioning for the most part. A small minority are so heavily affected that they can do little but stay in bed. Another small minority are hardly affected at all.

I ask about Sundays. Since those days are the focus of the most public part of my work, is there any way to predict which Sundays will be the most difficult? No, there isn’t, absolutely – although it’s likely the worst Sunday of each three-week cycle will be not the first one after my chemo infusion, but the second.

Well, that’s something. But this whole thing is still frustratingly unspecific. There are so many variations in patient response, it seems, that no one can predict exactly how I’ll handle it. This thing is going to force me – a person who lives doggedly by the calendar – to wake up each morning, ask myself how I’m feeling, and decide then and there how I’m going to spend the hours that are given to me.

"Let the day’s own trouble be sufficient for the day" (Matthew 6:34). Jesus tried to teach it to me, but most of the time I’ve been too thick to get the message. Chemo may be the teacher that finally succeeds.

Thursday, January 12, 2006

Not a survivor as in that late, lamentable television series – the one with the gang of quirky individuals who, one by one, vote each other off a desert island – but a more positive ideal. Several weeks ago, I was filling out a form to register for an educational teleconference sponsored by the Leukemia and Lymphoma Society, when I noticed the form did not provide a check-off box for cancer patients. There was a box for health-care providers, and another for family members – but nothing for patients. The only remaining choice was to call myself a cancer survivor.

Wait a minute, I thought to myself. There’s been some mistake. But then I caught on. Everyone who is living with cancer is a cancer survivor! I checked the box, but still felt a bit uncomfortable doing so. My cancer diagnosis was only days old. I hadn’t yet received any treatment. How could I claim to belong to that courageous company of survivors – they who have weathered chemotherapy, or radiation, or surgery, or all three – that legion of battle-hardened veterans who have been knocked down time and time again, but have always gotten right back up? Had I truly earned my survivor’s merit badge?

In his classic book, Love, Medicine and Miracles: Lessons Learned About Self-Healing from a Surgeon’s Experience with Exceptional Patients (Harper Perennial, 1986), Bernie Siegel tells of a study of Korean War military survivors that was conducted by a psychologist, Al Siebert:

“He has found that one of their most prominent characteristics is a complexity of character, a union of many opposites that he has termed biphasic traits. They are both serious and playful, tough and gentle, logical and intuitive, hard-working and lazy, shy and aggressive, introspective and outgoing, and so forth. They are paradoxical people who don’t fit into the usual psychological categories. This makes them more flexible than most people, with a variety of resources to draw on” (p. 161).

Siegel continues,

“As patients, those who have or are developing survival traits are self-reliant and seek solutions rather than lapsing into depression. They interpret problems as redirections, not failures. They are the ones who read or meditate in the waiting room instead of staring forlornly into space” (pp. 162-163).

As a minister, I’ve always known this to be true – on an intellectual level. As I’ve visited patients in hospitals and prayed with them, I’ve seen some who have taken hold of their treatment and proceeded with a positive, can-do attitude, and others who just give up the ghost. I don’t need to tell you which sort of patient typically does better.

It’s the survivors who survive. That sounds like a truism, I know, but that's the way it is. The task before me in the months to come is not only to seek to fall in with that company, but also to feel like I belong in their midst.

Wednesday, January 11, 2006

During the children’s sermon in last Sunday’s worship service, I showed the children a special gift I had received in the mail a few days before: a stuffed animal called Sheena the Prayer Bear. The bear had been sent to me by the first-grade Sunday School class of the Presbyterian Church in Westfield, New Jersey. Kathy, a friend and former student of mine, is director of Christian education at that church. She suggested my name as someone for whom the first-graders could pray.

This Prayer Bear project is a way of teaching the children about prayer. The children actually made these stuffed animals (with some adult assistance, no doubt), and are sending them out to people around the world for whom they’re praying.

Today, Kathy sends me an e-mail link to the portion of the church’s website that describes Sheena’s "assignment." Kathy had suggested I send a photo of myself with the prayer bear, so I decided to send her two: one of me, and another that was taken during the children’s sermon at our church. These photos are now on the Westfield church’s website, along with the text of the e-mail I sent to the first-graders in response.

It’s a touching way to be remembered – and another reminder of the power of prayer. I keep hearing about how many people are praying for me, in so many different places. There’s something about the ordeal of cancer that makes one feel very alone at times, and this sort of thing truly helps.

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.